Gah. Back again.
Almost seven years ago I roller-skated through Olivia Newton John hospital to Xanadu for my last radiotherapy session, post lumpectomy. Here I am again... another oestrogen positive cancer, same stoopid dense breast. It was picked up on MRI as it couldn't be seen through my milky dense breast tissue and after an MRI biopsy (such fun!!!) I was diagnosed last week. So now I'm up for a double mastectomy and trying to make reconstruction decisions. I'm thinking I may need to go the Johnny Diep Flap. Seeing the plastic surgeon tomorrow. Really glad you're here....
Struggling with Negative Emotions
Good morning, I am new to the forum so apologies if this subject has been discussed previously. I had a double mastectomy in March 2024. Breast Cancer is so prevalent in my family, but all other family members have only needed a lumpectomy, not a double mastectomy. I'm not belittling their experience, but I feel I don't have anyone I can talk to about what a double mastectomy does to your psyche. Having said that I am conflicted as I am an extremely private person and wanted to keep my predicament to myself. However, my husband, mum and dad, SIL and work boss all told someone, who told someone, who told someone. I feel there was a total breach of my privacy and let down by them, even though they were all so supportive of me in many other ways. For me, I feel the best way to deal with the emotions of a double mastectomy is to just suppress the feelings, keep telling myself that there is always someone worse off, and keep everything normal. However that is hard to do when you are confronted everyday with a scar from underarm to underarm across your chest, pain is always prevalent somewhere (lymph node removal pain, pins & needles on my back and upper chest, scar pain, internal pain) and now I know everyone knows. OK, so I've thrown a lot out here, but I guess my questions are: - I'm wondering if anyone else feels betrayed (justified or not) by the ones they love and trusted? How do I get past that? - How do I stop feeling like those that have had a lumpectomy had it easier than me, when I know they all had their own difficult journeys? I'm normally a positive, glass half full type of person, but I'm so emotionally confused at the moment and this is not the normal me. I usually live my life accepting that everyone's journey is individual to them, but at the moment I just feel like those who haven't gone through a double mastectomy just simply can't understand. And I know this isn't fair, I know it, but it's where my mind is at right now. Any words of wisdom, tips, life experiences that you could share would be very appreciated, so I can get back to my positive self. Regards J
Newly diagnosed - breast reconstruction decisions
Moderator moved @Dutchy1_kim post from 'Activity' feed to 'Newly Diagnosed': Dutchy1_kim Hi I am a new member as of today. I am looking for information, shared experiences, support and honest answers. I was diagnosed with DCIS and invasive tubular breast cancer. I have had a lumpectomy with lymph node removal. After further testing, i had 35mm around one tumor of DCIS and 15mm around the other tumor. My oncologist has now booked me in for a double mastectomy with a DIEP flap reconstruction. Would love to hear from someone who has gone through something similar. Thank you!
Overwhelmed and lost
Hey everyone I'm Shannon, I just turned 28 and recently was diagnosed with breast cancer. I lost my mother to cancer when I was 17 after a 7 year battle that started as breat cancer. So everything about this diagnosis has truly shaken me. Our family does carry the bracca 1 mutation. I was diagnosed when I first noticed my nipple changing and was very suspicious. That's when I found the lump. Everything since then had been full throttle and I don't feel like I'm dealing with any of it. From finding the lump it went to gp exam a week later, rushed for an ultrasound that day, to my results appointment 4 days later where I was greated by a very frantic doctor telling me I have two malignant tumours that must be removed immediately. The next 10 minutes was my doctor on the phone to the breast surgeon in my area demanding I am seen immediately, followed by him telling me I must demand a double mastectomy and refuse to back down. That was a little over a week ago and today I received a letter of my surgery consultantion on Monday. I feel so overwhelmed by everything. I feel like I have no idea what's actually going on or how to process any of this when I don't even have any information. I'm trying to prepare a list of questions to ask my surgeon on Monday but I don't even know what I need to ask? Google is proving horrifying when trying to find information about all of this so I thought maybe this would be a good place to start. I know I'm truly not alone in this but it's so hard no to feel that way right now which I guess is fairly common. So I'm wondering, does anyone have any advice? Advice on anything really. How to prepare, what to expect, how to start processing this. I don't even know what's in store after surgery. Do they run test? Will there be more treatments? I really just feel so lost and confused about everything that's going on and would really appreciate some words of wisdom from some lovely souls who know what I'm feeling right now.
About to have double mastectomy no reconstruction - any tips?
Hi All, I have finished 5 months of chemo and next step on 1st November is a double mastectomy and R lymph node clearance, I have chosen no reconstruction. I was just wondering if anyone had any tips for the hospital visit and recovery time? Anything you would have liked to know beforehand? I have just gone and bought a couple of button up PJ tops and a few button shirts for home. Thanks :)
New DCIS diagnosis and surgery
Hi all, new diagnosis of DCIS in right breast (3.2cm x 2.7cm) and ADH in left breast (5.2cm). Appointment with surgeon today to let her know of my choice of treatment (bilateral mastectomy, lumpectomy/mastectomy or bilateral lumpectomy). Surgery set for 13/1/23. Anyone had similar diagnosis before? Any feedback wound be lovely. Thanks :)
Tips for Hospital
Hi everyone. I am heading to Perth (live regionally) in a week for double mastectomy and stage one of reconstruction (lat dorsi and tissue expanders inserted). I won't have the luxury of anyone 'popping home' to grab anything I need so am trying to cover all bases in the packing. I am a Private patient and have been told I will be in hospital 6-7 days. Any handy tips on what I should take would be greatly appreciated. I am nervous, scared but also keen to get the first step to recovery underway. I am a single mum (one Year 12 still at home, one at University in Perth) heavily reliant on my paycheck and nervous about the future as far as work is concerned but one step at a time....
Second time around
Hello.... I was diagnosed with DCIS Invasive grade 2 breast cancer in my left breast in Nov 2009 when I was 43yo after been sent for a mammogram because I had never had one before. I had a lumpectomy and a sentinel nobe biopsy. A dot of inconvenience was found in one of the lymph nodes which led to a second surgery and an ancillary clearance removing a further 24 lymph nodes. This surgery had an ‘all clear’ result but I needed 4 rounds of chemo as a precaution and then 6 weeks of radiation. I then took Tamoxifen for 5 years as the cancer was hormone receptor positive. I have continued with my annual mammograms and ultrasound, have needed a couple of fine needle biopsies but generally had a pretty good run the past 11 years. Until Nov 2020 😢 my routine checkup resulted in a vacuum assisted core biopsy of my right breast and the diagnosis DCIS. F@@k her we go again! Abnormal cells were located as they had calcified so could be seen on imaging! How lucky was I? If the cells didn’t die, would have been a whole lot different in 12 months time as My surgeon requested that I have a MRI to check for anything else. An area of 3-4cms was located which meant the surgical margins were increased to get a ‘clear result’. I am now going through the motions of deciding what to do next? Can opt to just do radiation again and then roll the dice a third time and see what the future brings? But I am 99.9% decided to have a bilateral mastectomy.. I took the genetic test for BRCA 1/2 mutation...results were negative, so it’s just me 😜 I also found out from my surgeon that once you have had radiation on your breast, you can’t have it again so if it was in my left beast, I would have had it take off anyway. With radiation alone, the risk of breast cancer coming back would be 20% versus just 1% after having a mastectomy.. In my head it’s a no brainer but I am really starting to grieve about my decision and they haven’t even gone yet! I have spoken to a private reconstructive plastic surgeon and I would be eligible for a ‘Tram Flap’ recon which seemed quite appealing in the start as I would be getting a tummy tuck too (had to be a silver lining there somewhere) but the length of the operation and the out of pocket cost was a lot more that I expected and I have decided not to weigh myself down with that for the moment. The breast cancer support centre ‘Choices’ advised me to just put my name down on the public waiting list, so I think that is what I will do and decide that in a couple of years... I just need to get my head around what I am going to look like on the other side of the mastectomy surgery? I know I am stronger to cope with this having been diagnosed for a second time. The first diagnosis definitely made me stronger and more resilient in my life. I am not backward in coming forward, never hesitate to eliminate things in my life that cause me grief. That’s why I don’t feel any loyalty to my breasts as they definitely are not my BFF’s. I have breast fed 3 beautiful kids (now all adults) so I really don’t need them anymore and the thought of never wearing bras around the house is starting to feel pretty good! I am currently a DD size so I am quiet envious of my daughter coming home and the first thing she does is take her bra off!! In all seriousness though....I just need to get my head around this choice as it’s not like going to the hairdresser and having a bad hair cut and saying ‘it will grow back’. Once they are gone, there is no coming back. But I just don’t want to roll the dice again 🤔 thanks for reading my story, any advise would be greatly appreciated ❤️ Christine x
New and wanting to say hi 🙋♀️
Hi 🙋♀️ I have trolled on here since being diagnosed triple positive in October 2020! I had a bilateral mastectomy and left axillary clearance in November in which they found a 2nd lesion! so I have invasive lobular and ductal 🤦🏼♀️ Anyway I started AC chemo last Friday fortnightly for 8 weeks then taxol for 12 weeks. 25 doses of radiation and herceptin 3 weekly for 12 months. Then all going well 10 years of endocrine treatment! I just wanted to say Thankyou I have found this network a wealth of information and feel so grateful 🥰 Of course I knew nothing when I first started and felt like a deer in the headlights so to speak. 🦌
Newly diagnosed - double mastectomy
Hello everyone, I'm new on here and sending hugs as we all need them <3. Firstly I am not great on computers but have read the helpful notes about posting so here goes. I had a recall from my mammogram and as this had happened before I was not really worried and thought it would be a false alarm. Then when being examined I was told that I needed a core biopsy and again I thought that they would find nothing and it would be ok. It wasn't ok and I went to our local breast clinic where I was told I had DCIS. As this was precancerous I thought this would not be too much of a worry. I was told I would need a lumpectomy and five weeks ago had the operation. Small scar not too bad, hoped that was that. No, I got a call from the surgeon the following Tuesday to say that they had found cancer in the margins and had not taken enough out and so wanted to operate again in 3 days, opening up the same scar but making it larger to get it all out. Well to cut a long story short, the lab result from the second lumpectomy threw up something "unexpected" which means that the only sure way to get rid of the cancer is to do a double mastectomy as the other breast is probably a timebomb too. Still reeling from the shock of it all to be honest and feel like I am in some parallel world where I am in a nightmare but everything else is normal. I am dreading the mastectomy but also know it's the best thing to do. It's all a bit of a whirlwind isn't it and trying to be brave and positive to family. I am going to watch the BCNA Webcast this coming Wednesday (the kids have explained what it is) which I think will be very helpful. Thank you for reading and I'm glad this online meeting place exists.